Experiences of Living with Severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, 2021, Strassheim et al

https://www.mdpi.com/2227-9032/9/2/168

 

There are points to take issue with in this e.g. that CFS/ME (not ME/CFS?) is a diagnosis of exclusion. Also, the idea of the relevance of transition points in life - seek and you would find them in any life, especially in the age groups most likely to fall ill with ME.

n=5 lived experience might be given on Twitter to the person who twittered about her lived experience (I don’t tweet)?

 

The NHS seems to use CFS/ME.

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

 

NICE are calling it ME/CFS. Maybe the NHS will change their wording once the new guidelines are published.

 

A very mixed bag.

Documenting the lived experience of severe patients is valuable and many of the issues raised by the 5 patients deserve to be documented on the public record. However, I think I would have preferred to simply read the 5 accounts as they were given. I suspect all that categorising into themes and analysing them through a sociological lens adds little of value, rather the opposite.

Trying to identify the best way to include severe patients in research is also valuable but while they stated this as an aim of the study - and described how they proceeded with some care for patient welfare - there's no mention of them asking patients about adverse effects. Interviews lasted 1-2 hours. I'd be very surprised if this didn't lead to PEM.

Then they draw all sorts of firm conclusions based on a mere 5 accounts reinterpreted by the author/s. Who seem/s to have an obsession with "transitioning points in life" and categorise/s almost anything and everything as being such a life transition point and, having done that, conclude/s this is a risk factor for severe ME.

The authors are clearly sympathetic but also seem a bit ignorant or naive about the history, how else explain sentences like these? With another illness you could (maybe) argue the statements are neutral or even positive but we're talking about ME here...

 

I haven't managed to read article properly yet but found in the acknowledgements at the end, thanks expressed to, "Researcher and Health Psychologist Practitioner, Vincent Deary for his guidance and insights into the presentations of some of the participants."

He was one of the authors of CBT manual for PACE trial.

 

They would, but somehow there is a belief that medical professionals must vet information even if they cannot actually do anything meaningful about it. Even if all it means is reporting what patients reported, without that magical step the data are considered useless. A good example is the Body Politic paper, which many contrarians have dubbed laughable precisely because it did not involve medical professionals acting as intermediaries "blessing" that facts are as reported and dismissing those that do not fit expectations of a respiratory disease with only respiratory symptoms.

This is especially weird when attempting to determine the range of symptoms, as symptoms cannot be independently verified by medical professionals anymore than by psychics. If someone says they have a headache there is simply no way to determine that. Which may explain why this type of research never happens, because there are always people filtering the data and dismissing most symptoms as outside the bounds they arbitrarily set. And since future data must meet expectations, the cycle is impossible to stop.

Medicine is just built this way. There is a ritual element to it, even if the end result is to degrade the information to the point of being misleading, very lossy information compression. Blessed degraded data are considered more valid than raw data that have not been filtered by an arbitrary process. In every other profession manipulating data this way is what is considered invalid. Medicine is really weird, kind of contrarian.

 

Yeah I don’t know what they are talking about. https://www.genome.gov/FAQ/Rare-Diseases

So 200,000 in US is less than 0.06% of population.

 

I have been thinking about this for a while (since we first started discussing values for the forum etc). This may be challenging as a qualitative discussion group but we may be able to contribute by throwing some ideas around as a precursor to something quantitative. I’m not a fan of qualitative studies being used on their own without anything to back them up like the above ...it’s misleading IMO.

I can see a few pitfalls by trying to use a forum like this to get qualitative data. The biggest one is knowing what views come from what standpoint so you can give context etc. The active members here are already biased, quite a small pool and almost certainly not representative of all PWME; e.g less mild people, more tech savvy/science orientated, age biased etc etc. It’s also quite random as to who you will get at any one time due to a number of reasons (ability to contribute due to health, subject matter that people are interested in etc etc). PWME are also quite heterogeneous in their presentation, severity and experience. I think that’s a problem with ME surveys generally.

My experience of qualitative studies is that they are limited to 8-10 participants and preselected for the questions you want to ask (e.g gender/age/severity). These need to be small since they need to be moderated to keep the group on track and ensure all voices/perspectives are heard. There is normally a neutral trained leader of the group that acts to moderate and bring the group back to the task at hand (exploring the subject). This is very different to moderation here where it’s an open ended free for all and not generally time bound. I’ve attended groups like this and seen them run very badly (where half of the session is dominated by one or two loud voices that hijack the session to talk about something totally unrelated. Equally I’ve seen groups very carefully run and been surprised at the skill needed to draw out opinion etc (I would be useless at this).

A good leader of a qualitative group can sit back and listen and bring the group back to exploring the questions posed without leading. By attending they also have a better handle for interpretation of the results. By observing well they can generate the insight from attending the session in real time. I can see that approach wouldn’t work here because of the nature of discussion and how it evolves etc. The members here are also limited to written text so you lose something (body language/strength of feeling etc) that could cloud interpretation.

The strength here would be to explore ideas in a different way I think but I’m unsure how you get past the selection biases or know how representative the discussion is?

it still comes back to qualitative studies are of limited value other than to confirm you are roughly on track with your ideas. Perhaps the testimonial idea is the best where participants are pre-screened, asked to describe their experience/views in an open ended way to posed questions and then interviewed 121 as follow up? The results of this would still be open to interpretation which is half the problem and of course the questions posed may be off beam.

I think the value here is more about advocacy and critiquing via open ended debate with the scientists in the very early stages to come up with direction to the questions in the first place. This sort of debate used to happen in the research lab I worked in when we would be working on a proposal. We would throw our ideas around/problem solve amongst ourselves in a very open way. That was a biochem lab though and our issues were quite technical but I don’t see why that wouldn’t apply to lived experience.